It feels like I haven’t blogged about multiple myeloma in a while…
It started with a pain on the side of my upper chest on April 16th, which grew worse day by day, until it hurt to take a breath. My first thought was breast cancer (I don’t know why. I’m a little over due for a mammo?). Then I thought I had COVID-19, you know you read a symptom “tightness in your chest” – but when the rubber hits the road what does that mean?!? I called Smilow and they said to call back if it got worse.
It hurt to lift my arm. It hurt to lay in bed. It hurt to take a breath. It hurt. But, I was already scheduled to g in for treatment on Thursday, so I waited. And it got worse.
So there’s a lot of blah, blah, blah between then and now that goes something like this:
- X-ray = broken rib, maybe indication of bone lesion.
- PET scan, full body = single bone lesion on the left rib where the break is.
- Conversations with Dr. Seropian at Smilow = change in treatment? radiation? what does Dana Farber think?
- Video visit with Dr. Munshi = (I love Dr. Munshi, have I mentioned that? I love him so much I may be in love with him.) Orders a bone marrow biopsy, unusual that it’s just one lesion, my numbers are creeping up but not too dramatically.
- Bone marrow biopsy = (Have I mentioned that I hate them? Well, I do, they hurt. They stick a needle into the bone of your hip to remove marrow and they take a bone sample.) It was a bit of a shit show, after the APRN telling me I should not feel any pain down the back of my leg, I got pain down the back of my leg. And then he had to call in someone else to do it. She struggled a bit, I had my earbuds in with very loud music so I couldn’t hear it all, at one point she said “Maybe this needle isn’t sharp enough.” Nice. And then I got pain down the front of my leg. Afterwards she said I have very hard bones, whatever.
- Almost 2 weeks for bone marrow biopsy results = Change in treatment, the myeloma is back. Relapse.
Relapse. “Some people stay with this regimen for 20 years.” That is not going to be me.
But, this is not tragic. There are many, many treatments for multiple myeloma. Everyone’s path is different. I have a friend who was diagnosed 12 years ago, had a stem cell transplant 11 years ago, but that only held for several months, relapse. But since then he has been on the same regimen, without another relapse.
It is also not great news. I am back to being a full on patient.
My new “regimen” is daratumumab/pomalyst/dexamethasone (although the pomalyst might be up in the air, it is similar to revlimid which my blood counts struggled with, doctors are discussing, we will see). Daratumumab (aka Darzalex, Dara) is a targeted monoclonal antibody. It binds to CD38, a protein found on myeloma cells (this protein is also found on other cells, such as red blood cells). It is thought to slow myeloma cell growth in several ways, including by helping the immune system to seek and destroy myeloma cells. It is not a chemotherapy, it is an immunotherapy. The side effects are similar to ones from my previous treatment regimen. I did not enjoy taking dexamethasone when I was first treated, we’ll see how I do with it this time.
The greatest risk is an infusion reaction. So they give it to you very slowly in the beginning. They pre-medicate you with 50 mg of Benadryl, Tylenol, Singulair, and the dexamethasone and wait 30 minutes. I had my first infusion yesterday and made it through with flying colors, no reaction at all, so they anticipate that I will not have one. The administer half of it each in back-to-back days, so I go back today for the second half. I was there yesterday for 6.5 hours, the infusion takes 4 hours and then you have to wait 30 minutes to make sure you are stable.
Next Thursday the infusion will only take 90 minutes (which means at least 2.5 hours) and that’s what it will be going forward. The schedule is once a week for 8 weeks, every other week for 3 or 4 months and then monthly. So, monthly will be good, I’ve been going every other week for 5 years.
At my last appointment at Dana Farber in January, Tina Flaherty, my APRN, was talking about all the treatments coming down the pike and then said, “But you don’t have to worry about that, you’re only in the first inning.” So now, I guess I’m in the 2nd inning.